Every state has services for children with special health care needs. The Maternal and Child Health Services Block Grant, or Title V of the Social Security Act, funds these services. The grant tasks each state with ensuring the health of our nation’s women and children, including children with special health care needs and their families. Each state is permitted to tailor its services and programs to best meet its specific needs. This variation between states can be confusing because state Title V programs often have different titles and types of service.
Title V programs
These programs provide access to medical services to children under the age of 18 who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition. These children typically require health and related services beyond that required by most children.
In addition to providing direct, personal health care services to eligible children, state Title V programs have a responsibility to improve the quality of health care for children with special health care needs, including assisting with:
- Delivery of health care services — Organization and delivery of health care services that meet the emotional, social and developmental needs of children
- Development of health care plan — Integration of families into all aspects of developing and updating the health care plan
- Support for families — Support for families based on alternatives and choices that meet their needs and strengths
- Facilitation of professional collaboration — Facilitation of family and professional collaboration at all levels, especially in planning, implementing and evaluating programs and related policies
Additional benefits of Title V programs may include:
- Early identification of health or developmental problems
- Screening of the child and family’s concerns, priorities and resources
- Tracking or monitoring
- Therapeutic intervention, including family education, support, resource identification, referral and coordination
Determining eligibility for Title V programs
Title V programs vary state to state, but eligibility is determined by:
- Age — Children are eligible from birth through age 18 (21 years of age and older in some states).
- Medical criteria — Medical eligibility is determined at the local Children With Special Health Care Needs office.
- Income — Families must meet established income eligibility guidelines. In most states, parents are asked to financially participate in their child’s medical care based on a sliding scale and to use any third-party coverage they may have.
Here is where Title V programs are available:
- All 50 states and the District of Columbia
- American Samoa
- The Federated States of Micronesia, Guam, Marshall Islands, Northern Mariana Islands, and Palau
- Puerto Rico
- The Virgin Islands.
Learn more about the Title V program in your state:
State Maternal and Child Health agencies are required to maintain a toll-free hotline to help you get information about your state’s Title V programs and providers. Check out this directory to locate your local Title V program’s information. The national Title V toll-free hotline number is 800-311-2229 (Spanish: 800-504-7081).
Family-to-Family Health Information Centers
Each state has centers to assist you. Health professionals and family members who have children with special health care needs staff each center. The family members offer firsthand experience navigating the health care maze. All Family-to-Family Health Information Centers provide information and referral, education, training and support services. Visit the Family-to-Family Resources directory for more information.
For additional resources see eparent special needs resource directory